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IOSR Journal Of Humanities And Social Science (IOSR-JHSS)
Volume 20, Issue 4, Ver. II (Apr. 2015), PP 01-06
e-ISSN: 2279-0837, p-ISSN: 2279-0845.
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Comparative study of perception of stigma among caregivers of
persons with Bipolar affective disorder and Schizophrenia
Pravin B. Yannawar1, Jahanara M. Gajendragad2, Sangeeta Gotewal3, Shashi
Bhushan Singh.4
1
Psychiatric Social Work Consultant- Department of Psychiatric Social Work, Institute of Human Behaviour
and Allied Sciences, Delhi, India.
2
Associate Professor & Head, Department of Psychiatric Social Work, Institute of Human Behaviour and Allied
Sciences, Delhi, India.
3
Psychiatric Social Work Consultant- Department of Psychiatric Social Work, Institute of Human Behaviour
and Allied Sciences, Delhi, India.
4Lecturer in Statistics, Department of Preventive and Social Medicine, Rajendra Institute of Medical Sciences,
Ranchi, India.
Abstract: Many people with serious mental illness struggle with the symptoms and disabilities that result from
the disease and are also challenged by the stereotypes and prejudices that result from misconceptions about
mental illness. As a result of both, people with mental illness are robbed of the opportunities that define a good
quality life: good jobs, safe housing, satisfactory health care, and affiliation with a diverse group of people.
There are still attitudes within most societies that view symptoms of psychopathology as threatening and
uncomfortable, and these attitudes frequently foster stigma and discrimination towards people with mental
illness. Stigma may result in various forms of exclusion or discrimination – either within social circles or
the workplace.
Mental health stigma can be divided into social stigma, which is characterized by prejudicial attitudes and
discriminating behaviour directed towards mental health problems and perceived stigma which is the
internalizing by the mental health sufferer of their perceptions of discrimination. Perceived stigma can
significantly effect in feelings of shame and lead to poorer treatment outcomes.
It is important to understand the aspect of prejudice against mental illness. By addressing this important issue
appropriately, it is easier to create a supportive environment for persons with mental illness.
Key Words: Caregivers, Stigma, Mental illness.
I.
Introduction
The stigmatization of mental illness is currently considered to be one of the most important issues
facing the mental health field [1]. An enormous number of persons are affected by mental illness worldwide. It is
estimated that 1 in 5 persons will suffer from a mental illness each year, with about 6% showing forms that
indicate high levels of severity [2] [3]. Although individuals with mental illness suffer from a wide range of
negative effects and impairments related to the disorder itself. These outcomes are exacerbated by societal
stigmatization of their illness.
Stigma is a serious concern for individuals with Bipolar Affective Disorder and their families. Stigma
occurs within affected individuals, families, social environments, work and school environments, and the
healthcare industry. With stigma often come a loss of social support and occupational success, reduced
functioning, higher symptom levels and lower quality of life. Bipolar Affective Disorder stigma is comparable
to that of other severe mental illnesses, such as schizophrenia. [4]
Families of persons with mental illness face a range of practical and emotional stresses. Studies
suggest that burdens could come from the stigmatizing attitudes. Stigma surrounding mental illness is so strong,
that it places a wall of silence around this issue. Stigma related to schizophrenia in India is particularly high [5].
Stigmatising attitudes towards people with mental health problems are widespread and commonly held.
The most commonly held belief was that people with mental health problems were dangerous – especially those
with schizophrenia, alcoholism, and drug dependence. People believe that people with mental health problems
were generally hard to talk to. People tend to hold these negative beliefs regardless of their age, regardless of
what knowledge they have of mental health problems, and regardless of whether they knew someone who had a
mental health problem.
The impact of stigma is twofold. Public stigma is the reaction that the general population has to people
with mental illness. Self-stigma is the prejudice which people with mental illness turn against themselves. Both
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Comparative study of perception of stigma among caregivers of persons with Bipolar ….
public and self-stigma may be understood in terms of three components: stereotypes, prejudice, and
discrimination. Although stigmatizing attitudes are not limited to mental illness, the public seems to disapprove
persons with psychiatric disabilities significantly more than persons with related conditions such as physical
illness [6] 7] [8].
Individuals with mental illnesses are highly stigmatised. Many people who might benefit from these
services do not obtain them, or do not fully adhere to treatment regimens once they have begun. Treatment
adherence plays a vital role in psychiatric rehabilitation [9]
Poor adherence to medication and psychosocial treatment is prevalent among individuals with
schizophrenia, which increases their likelihood of relapse and re-hospitalisation [10] [11] [12]. While stigma does
not affect quality of life, it sharply affects the self-esteem and personal growth of mentally ill. Self-esteem and
personal growth are more affected by stigma of mentally ill patients than physically ill patients.
Stigma has been argued to be a major determinant of outcome of severe mental illness across cultures
[13]
Studies on stigma and mental illness in the Indian setting have focused both on measurement of stigma and
on locally important socio-cultural factors shaping stigma[14].
The cultural dimension and cross-cultural comparison of stigma related to depression has been studied
which measured illness experience, symptom prominence and indicators of stigma among 80 outpatients from
mainly urban backgrounds [15]The study concluded, amongst other findings, that patients reporting somatic
symptoms had lower stigma scores than those reporting psychological symptoms.
Another study examined perceptions of stigma among caregivers in a sample of 159 urban patients
attending outpatient clinic and fulfilling DMS-IV criteria for schizophrenia. Findings suggested that female sex
of the patient and a younger age of both patient and caregiver were associated with greater stigma. An
interesting conclusion that emerged from analyzing illness attributes of study subjects was “a lack of an
explanation” for the illness among the high-stigma group of families. [5]
Stigma and discrimination linked to schizophrenia was found to have a significant impact on the lives
of these individuals from a study investigating the patients’ perceptions of stigma. It was reported that with
respect to perceived causes of stigma, a strikingly large percentage of participants (97%) believed that stigma
was caused by a lack of awareness about schizophrenia, followed by the nature of the illness itself (73%).
Behavioural symptoms associated with schizophrenia were also thought to cause stigma, whereas drug-related
complications were seen as playing a less influential role in stigma. Sixty nine percent of patients felt that
stigma came from attitudes from the general community, 46% from co-workers and 42% from family members
[16]
.
It is evident that stigma leads to negative outcomes for those with mental illnesses. Specifically, it
means because of it, the mentally ill avoid seeking treatment because they fear being discovered and in turn
shunned from society. Consequently, they increase their duration of untreated illness, continue to experience
debilitating symptoms and as a result face the very stigma they were attempting to avoid in the first place.
II.
Material and Methods
Aim - The aim of the present study was to assess the perceived stigma of the caregivers of persons with
Bipolar Affective Disorder as compared to Schizophrenia.
Objectives
 To assess the stigmatizing beliefs among Caregivers of persons with schizophrenia.
 To assess the perceived stigma in relation to the clinical variables like duration of the illness as well as
medication compliance.
 To study the relationship between stigma and various socio-demographic variables between two groups,
i.e., Schizophrenia and Bipolar Affective Disorder.
This study was a cross-sectional hospital based, carried out at the Institute of Human Behaviour and
Allied Sciences (IHBAS) in Delhi. For the purpose of study 30 caregivers of persons having the diagnosis of
Bipolar Affective Disorder and 30 patients of Schizophrenia were selected purposively as per the inclusion and
exclusion criterion of the study. After selection of the samples instruments like Socio-Demographic and
Clinical Data Sheet, and Devaluation and Discrimination Questionnaire were used for data collection. A written
as well as informed consent was taken from the samples of either group before starting data collection.
Inclusion criteria for patients
Persons aged between 18 – 60 years, fulfilling the ICD criteria for schizophrenia/ Bipolar Affective Disorder,
and who were clinically stable at the time of the study.
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Comparative study of perception of stigma among caregivers of persons with Bipolar ….
Inclusion criteria for caregivers
Caregivers of persons with Schizophrenia / Bipolar Affective Disorder, aged between 18 – 60 years who were
living with the patient since the past 2 years.
Exclusion criteria for Care givers
Caregivers who had any major physical /psychiatric illness were excluded from the study.
Tools
Social Demographic proforma with clinical details
Socio-demographic schedule was used to elicit socio-demographic profile of the subjects. This schedule had
covered domains like age, gender, education, occupation, socioeconomic status, income.
Devaluation & Discrimination Questionnaire
This is a 12-item rating scale measuring perceived public stigma. Responses are obtained on Likert
Scale ranging from strongly agree = 1 to strongly disagree = 6. Higher scores indicate greater perceived stigma.
The scale yields internal consistency of .81 and split-half reliability of .69 among clinical and community
samples. This scale was aimed to measure subjective perception of stigma, which also records the respondents’
assumption of how the general population, i.e., “the others”, presumably thinks about mentally ill people.
III.
Results
Table I - Socio-demographic details of the patients
Variables
Age ( In years)
Education (yrs.)
Gender
Male
Female
Religion Hindu
Muslim
Sikh
Others
BPAD (n=30)
Mean+SD/ n (%)
35.10± 10.36
Schiz (n=30)
Mean+SD/n (%)
37.13 ± 9.98
t/ χ2
df
.774
58
0.442
9.93 ±3.85
10.68 ±4.60
.639
58
0.525
18 (60)
12(40)
.071
1
0.791
19 (63.33)
11(36.67)
Domicile
Rural
Urban
Semi urban
Family Type
Nuclear
Joint
Extended
Compliance
Good
Average
Poor
23(76.7)
6(20.0)
1(3.33)
22(73.3)
5(16.7)
2(6.7)
1(3.3)
4(13.3)
26(86.7)
Nil
P Value
1.44
3
0.695
4(13.3)
22(73.3)
4(13.3)
4.33
2
0.115
15(50)
14(46.7)
1(3.3)
15(50)
9(30)
6(20)
4.658
2
.097
15(50)
15(50)
Nil
12(40)
18(60)
Nil
.606
1
.436
In the above table, persons with Bipolar Affective Disorder are found to be having mean age of 35.10
where as in Schizophrenia mean age is 37.13. Around 63.33% male and 36.67% female respondents were
reported in BPAD, where as 60% male and 40% females were reported in Schizophrenia group.
It was found that, majority of the respondents belonged to the mean age group of 35 to 37 years in the
schizophrenia and bipolar affective disorder respectively. Majority of the caregivers were male in both the
groups. Majority of the caregivers belonged to the urban areas.
It was also observed that most of the persons visiting to the hospital were from Urban or semi urban
background i.e. 86.7% each in BPAD and Schizophrenia. Compliance to the treatment in both the groups was
quite encouraging i.e., 50% each good and average in Bipolar disorder; and 40% having good and 60% average
compliance in Schizophrenia.
Table II – Comparisons of DDQ with Socio Demographic details of the Caregivers
Socio Demo Graphic
Variables
Genderg Gender
Male
Female
Age (Yrs.)
18-20
n (%)
Mean Score of
DDQ
Std. Dev.
37(61.7%)
23(38.3%)
38.08
37.26
5.82
6.40
1(1.7%)
38.00
-
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T value/
F value
0.511
P value
0.611
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Comparative study of perception of stigma among caregivers of persons with Bipolar ….
21-40
41-60
Years of Education.
0-5
6-10
11-15
16 & above
Domicile
Rural
Urban
31(51.7%)
28(46.6%)
37.55
38.00
4.74
7.34
12(20%)
13(21.7%)
32(53.3%)
3(5%)
39.50
38.69
36.44
41.00
9.05
6.12
4.54
2.00
8(13.3%)
52(86. %)
41.88
37.13
8.81
5.30
0.041
0.960
1.264
0.296
2.139
0.037*
The above table shows the comparison of Devaluation and Discrimination Questionnaire (DDQ) with
socio demographic details of the caregivers. Marginal difference could be seen in the mean score of both the
genders.
Variation could also be seen in the mean score of the education category. People with lesser education
could be seen having less mean score as compared to the more educated people. It can be interpreted that less
education has no role in understanding or acceptance of mentally ill persons in the society.
Statistically significant difference could be seen in the rural and urban category, the details are
discussed in table III.
Among the caregiver respondents, 20 % caregivers were parents and another 20% were siblings; 42%
persons caregivers were spouses, only 6% caregivers were children and 12% were other relatives in Bipolar
affective Disorders. In the Schizophrenia group, 45% caregivers were parents and siblings, 25% were spouses,
10% were children and rest i.e. 20 % was other relatives.
Table III - Stigma among Rural and Urban Population
Level of Stigma
Domicile
Low
33.3%
56.1%
Rural
Urban
Medium
66.7%
41.5%
High
_
2.4%
In the above table it was found that, 33.3 % of the caregivers from rural areas expressed low stigma,
66.7% caregivers expressed medium stigma and no caregivers expressed high stigma. Alternately, 56.1 % of the
caregivers from urban areas expressed low stigma, 41.5% caregivers expressed medium stigma and only 2.4%
of the caregivers expressed high stigma. In contrast to the general opinion, findings related to stigma have been
encouraging. Stigma among rural and urban population also seems to be varying from low to medium level.
Stigma among rural and urban population also seems to be varying from low to medium level. Major
international studies suggest that schizophrenia has better prognosis in low income nations and in rural settings
[17] [18] [19]
.
Table IV - Item wise Analysis of Devaluation and Discrimination Questionnaire (DDQ)
Details of the
questions
As a Close Friend
BPAD(%)
SCHIZ(%)
t/ χ2
df
P Value
10(33.3)
Somewhat Disagree
17.389
4
.002**
As intelligent as
others
Trustworthy
15(50)
Agree
11(36.7)
Agree
.313
5
.997
10.99
5
.052
Accept as Teacher
9(30.0)
Agree
12(40)
Agree
9(30)
Agree
15(50)
Somewhat
Agree
17(56.7)
Agree
18(62.1)
Somewhat
Disagree
17(65.4)
Somewhat Agree
15(50)
Disagree
14(46.7)
Somewhat
Agree
11 (36.7)
Disagree
19(63.3)
Somewhat Agree
14(46.7)
Somewhat
Agree
14(46.7)
Agree
8.914
5
0.113
19.467
5
.002**
4.567
5
.471
6.727
5
.242
11.577
5
.041
7.64
5
.177
6.037
5
.303
Take it as personal
failure
Consider as
caretaker of the
child
Don’t think about
mentally ill
Don’t employ
despite suitability
Overlook the
application
Behave like any
other
9 (30)
Somewhat Disagree
16(53.3)
Agree
13(43.3)
Agree
13(43.3)
Agree
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Comparative study of perception of stigma among caregivers of persons with Bipolar ….
Girls will not
prefer to interact
9(30)
Agree
Don’t take opinion
17(56.7)
Agree
35.83
Total Score
9(30)
Somewhat
Agree
9(30)
Disagree
39.70
8.482
5
.132
17.381
5
.004**
2.612
58
.011**
In the above table, statistically significant difference could be found in the mean score of the
Schizophrenia and Bipolar Affective Disorder group. Statistically significant difference also could be found on
the 3 responses amongst the caregivers of persons with Schizophrenia and Bipolar affective disorders, which
was mainly relating to acceptance of a former mentally ill person as a close friend, take it as a personal failure
and not taking opinions of persons with earlier mental illness seriously.
The response to the questions pertaining to considering former mentally ill person as close friend has
been found statistically significant between the two groups. It can be interpreted that the acceptance of persons
with BPAD is much easier as compared to the persons with Schizophrenia. The response to the question as to
whether the former mentally ill persons can be accepted as teacher has also received mixed reaction. Caregivers
seem to have very less difference while perceiving stigma across male and female patients. The same is the case
with male and female caregivers. Stigma observed among the two groups was found to be having very less
difference on most of the domains, and are statistically not found to be very significant. Questionnaire used for
evaluating the Stigma has its limitation, as all the questions pertaining to stigma was possibly not found suitable
for the Indian culture.
IV.
Discussion
Considerable research has documented the stigmatization of people with mental illness and its negative
consequences. Recent literature further suggests that stigma seriously affects families of psychiatric patients [20].
Families with more education and whose relative had experienced an episode of illness within the past 6 months
reported greater avoidance by others [21]. Psychiatric labels themselves can elicit stigmatizing responses above
and beyond those attributable to symptomatic behaviour. Burden perceived by the family members were related
to stigma and lack of mental health and rehabilitation services. Consequences included social isolation of the
families [22]. As compared to the western literature, in the current study it was found that irrespective of the
nature of mental illness or its severity, the relatives or caregivers’ perception of stigma did not vary
significantly.
In the current study, statistically significant difference could be found between the stigma towards
Schizophrenia and Bipolar affective disorders. In the area of acceptance of the persons with mental illness in the
stigma scale, it has been found that because of stigma attached with mental illness, patients are not accepted by
the people in the community Studies suggest that mental health patients’ experiences are still not taken enough
into account, neither by mental health professionals nor by their social networks [23].
Statistically significant difference also found in the rural and urban population. Indian families, because
of their rich values and high tolerance level are able to cope with the stigma. Most families were thought to be
supportive and there was an impression that caring had made better family emotional ties. The DDQ scale has
been primarily used in Western set up; some of the questions in the scale cannot be generalized in the Indian
context. The study can be further planned within college, school or any other professional setting, where
perception of the stigma about mental illness can be measured in the community set up.
There is enough evidence to suggest that stigma is a clinical condition; it is related to the
phenomenology and symptom constellation of an illness. However, it remains poorly understood, investigated,
and treated. To address the issue of stigma in the treatment setting, it is necessary and likely to offer the best
possible anti-stigma program at an individual level. In order to achieve this goal, it needs to be demonstrated
whether or not stigma associated with mental illness can be quantified, and whether such quantification can help
clinicians in dealing with stigma.
V.
Conclusion
It is clear that stigma leads to negative outcomes for those with mental illnesses. Specifically, it means,
because of it, the mentally ill avoid seeking treatment because they fear being discovered and in turn shunned
from society. Consequently, they increase their duration of untreated illness, continue to experience debilitating
symptoms and as a result face the very stigma they were attempting to avoid in the first place. The mental
health awareness of caregivers and their attitudes towards mentally ill can be important factors in the early
initiation of the treatment of persons with Schizophrenia. If stigma is one factor that delays treatment seeking
and continuation, then specific measures to reduce stigma in a variety of mental illnesses may prove to be of
great value to achieve better outcomes. This will also allow for better patient integration into society as social
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Comparative study of perception of stigma among caregivers of persons with Bipolar ….
barriers due to prejudice are reduced. However, integrating stigma coping strategies in treatment in routine
clinical practice remains a challenge.
Improving community attitudes by increasing knowledge and understanding about mental illness is
essential if people with a mental illness are to live in, and contribute to the community, free from stigma and
discrimination. Reducing stigma may represent a cost-effective way to reduce the risk of relapse and poor
outcome occasioned by chronic exposure to stigmatising environments. In addition, significant gains in quality
of life may result if all patients with schizophrenia routinely receive information about stigma and are taught to
use simple strategies to increase resilience vis-à-vis adverse, stigmatising environments.
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